Aidan’s Story

Aidan & his Uncle John

My uncle John was born the youngest of 8 siblings. He was a normal healthy man who worked as a carpenter which also kept him fit and healthy. In December 2011 he fell ill with a disease called Goodpastures. Goodpastures is a rare autoimmune disease in which antibodies attack the lungs and kidneys, leading to bleeding from the lungs and to kidney failure. It may quickly result in permanent lung and kidney damage, often leading to death. Fortunately against the odds, my uncle John survived this. When John took ill I could see how the shock of nearly losing a brother affected my mum and the rest of the family. It was a shock to all who knew him. John was on kidney dialysis for quite a long time as a result of Goodpastures and clearly this had a massive effect on his day to day life, albeit that it kept him from complete kidney failure. This also had an effect on his immediate family, his wife Marie and two boys Colm and Barry who supported him along the way.

News came soon that John needed a kidney and had been placed on the Donor list. His sons were too young to be considered as donors. When I learned this I knew that this was Uncle John’s only hope of a normal life. Being the youngest sibling and already in his late 50’s I knew that it was very unlikely that his brothers or sisters, (my mum included) would be fit to be live kidney donors, although if age and health weren’t an issue they would all have put themselves forward. Knowing that my mum would have given anything to help her brother if fit, (as John would have for her if roles were reversed) I instantly made my mind up that I wanted to be considered as a donor. I spoke to my wife, we discussed the matter and I was assured of her support. My wife and I are fortunate to live close to her parents, who were also a great support to us assisting with our 3 kids where necessary throughout the process so my wife could support me. I made a phone call to the City Hospital and that started the ball rolling straight away.

I received the paper work and filled in a few forms and then received a phone call from Pauline Haslett (organ donor coordinator) who explained that I would need to come in for a day of tests to see if I was a suitable to be a live donor for John. These tests were rigorous and thorough. I learned a lot on that day about the process through talking to Pauline.

Despite having read a lot about the process it was certainly reassuring to get speaking to someone who had guided so many others through donation.

We spent the day of the tests in various areas of the hospital from floor to floor getting numerous tests done. Everything ran like clockwork, which was reassuring at this early stage as it instills confidence in the process. It was apparent the compassion and commitment that Pauline and all the staff and team had, and how receptive all the departments in the hospital were in making everything happen and run smoothly. There were a few further investigations needed with regard to some of the findings and results of that day. A few weeks later I met with the wonderful Dr Aisling Courtney to discuss these findings. I have no words to say how nice a person she is. I believed I was going to be looked after through this process by the best team in the ‘field’ but boy did I know this was true when I met Dr Courtney. At that point my thoughts turned to my job. I was concerned about the impact being a living donor would have on my job as a Firefighter as I need to maintain good physical health and a high level of fitness. I was unsure how a decision to go through with the surgery would be received by the Northern Ireland Fire and Rescue Service as it would mean that I would require time off work and after that would not be able to resume full operational duties for a further period. I need not have been worried. I was assured by the Service that I had their full support and received support from my Union. I was also advised that there are firefighters in England who have donated kidneys and have returned to full operational duties after a period of recovery. I am very grateful for all the support from my colleagues and officers alike.

With a few more tests and the full body M.O.T. now complete I was told that I had excellent kidney function and most importantly, I would be a suitable donor for my uncle John. As well as explaining the process to me the team also met with my wife and were able to answer any questions she might have and reassure her that I would be in safe hands. With 3 young children she was understandably keen to find out if being a donor would have negative effects for my own health and well being. At no time did I feel pressured to proceed as a donor and the team were able to answer all questions we had throughout. When I was told that I was indeed suitable to be a donor for John I was elated as I knew in my heart that John now had a really good chance of a normal life, I was only too happy to help. It was at this stage I decided to tell my mum. I hadn’t wanted to say beforehand as I may not have been a suitable donor and I didn’t want mum being worked up for nothing. Telling mummy that I was now potentially going to be giving Uncle John one of my kidneys was hard, but a wonderful conversation none the less.

Mummy was so happy that her brother John was getting a kidney, but understandably anxious about the fact that her son and brother would be going through surgery.

As John was going through dialysis he started to regain some kidney function. This came as a great shock to everyone because of the damage that Goodpastures stereotypically causes. Although John’s kidney function did rise, we were quickly to learn that it would never hold up, but whilst his function was there the operation was on hold. I have a life long friend called Sean Mullan. We worked together in the Northern Ireland Fire and Rescue Service and we were both stationed in Dungannon for years. Sean is married to the sister of my Uncle John’s wife, Marie. During a conversation with Sean he shared that he was going through the process of becoming a Living Donor as his own sister was ill and in kidney failure. He was very shocked, although I suspect he was also somewhat relieved to hear that I was going through the same process. Firstly it meant that John (his brother in law) was getting a kidney and secondly he had a sidekick to discuss the process with and support each other along the way as friends. As luck would have it our operations were scheduled for around the same time.

When I was given the date for the surgery it was arranged for my wife and I to meet the amazing Mr Peter Veich, a very talented surgeon. He was a gentleman to speak to, he explained the risks of the operation as minimal as they are to the donor and his professionalism and manner only reassured me further that I had made the right decision.

The surgery was scheduled for the 8th July so both Uncle John and I were admitted to the ward the evening before. Whilst I was on a ward my uncle John was in a side room due to the drugs to suppress his immune system in preparation for the operation. Pauline was on holiday at the time of the operation so we met Elaine Smyth, another one of the transplant co-ordinators. Her bubbly personality and ability to make us feel at ease was just the ticket to soothe the nerves. The following morning was an early start with me due to go to theatre at 8am. My wife, Bronwyn had arrived just after 7am and I was able to see her prior to going down. I have an existing shoulder injury and had discussed with the team my concern that the surgery might aggravate this. All the team were very sensitive to this and the wonderful Elaine even stayed in theatre throughout my surgery to help remind those there that my shoulder needed a little extra care. Mr Veich used his expertise and skill to minimise any strain and I appreciated that greatly.

Bronwyn was anxious the morning of the surgery, as would be expected. After seeing me off to theatre she went to get herself a coffee while I was prepped for surgery. She tells the story of going down to the entrance of the hospital and seeing Mr Veich standing in the shop reading the morning paper, just another day at the office. She tells me she decided there and then that if he was so relaxed about what he was about to do then she had no call to worry either.

Bronwyn remained in the hospital throughout the surgery and Elaine and the team were excellent at updating her when I was through surgery and into recovery. They also told my Uncle John the good news that my kidney had been removed and I was well and in recovery. Around lunchtime my Uncle John was taken down into theatre and the second part of the surgery was performed and my kidney became my uncle John’s. I was brought up onto the ward and whilst I was very groggy, Bronwyn tells me that the team continued to provide updates regarding John’ s surgery and told us that his new kidney had already started to produce urine on the operating table. It was very good of the team to think of updating us as well as John’s wife Marie, John’s surgeon Mr Connolly even spoke in to let me know all was well.

My first memory after surgery is of my wife holding one hand and Elaine holding the other up on the ward. I’ll not lie, I was very sore after the surgery and did take all the pain relief I could but the staff were caring and attentive.

Dr Courtney and Mr Brown also checked on me and Mr Brown and I spoke about the important things in life, namely fishing. I could not speak highly enough of the whole team who were friendly, approachable and very very professional.

The following morning I was able to get up and have a shower and venture down to see my Uncle John. I was provided with updates about how his kidney was doing and we were all thrilled with the results. I was able to go home on the Thursday and got the TLC I needed at home. There was a set back in that I had contracted an infection in the wound during surgery that delayed the healing process. It was a while before this was identified but once it was I was prescribed a course of antibiotics which cleared up the infection and allowed the healing process to begin properly. I was tired and uncomfortable for a period after the operation but nothing that couldn’t be managed with pain relief at home.

It’s now several months since the surgery and I am back to being able to cycle and carry on with the activities I enjoyed before the surgery and more importantly Uncle John’s kidney is functioning fantastically. He is able to do the activities that he would not have had the strength to do before the transplant and is back to enjoying life.

I have no regrets about my decision to become a living donor and only positive memories of my experience.